Understanding the Zebras of the Cancer World

If you heard hoofbeats, what animal would you think of? A horse, right? It’s the most obvious answer. Unfortunately in the medical world not all diagnoses are horses, or the most likely possibility, and sometimes physicians need to look for the zebra, or the less likely scenario, when making a diagnosis. In the cancer world, neuroendocrine tumors are the zebras. Represented by this analogy because of their rarity, neuroendocrine tumors make up just 2% of nationally treated cancers.

Neuroendocrine tumors can originate anywhere within the body, are difficult to detect and can remain undiagnosed for quite some time. They tend to be slow growing, and patients often don’t realize the tumor is present because symptoms are most often mistaken for signs of other ailments. An individual, for example, may develop abdominal pains from a bowel obstruction caused by a neuroendocrine mass, be treated for the gastrointestinal symptoms and the tumor will remain, unnoticed and untreated.

Patients who have suffered through such a dilemma will come to us down the line and ask: Why did my doctor not diagnosis this sooner? The answer: it’s an extremely rare cancer.

Here at Roswell Park, we have a dedicated, multidisciplinary team that focuses on treating these tumors. We know what to look for and what testing to do. So we actually are able to help patients live a long time–decades–even patients with late-stage neuroendocrine cancers. Advances in a variety of fields have helped us to understand these cancers much more. We can now create long-term treatment plans that offer a smooth and healthy recovery.

The goal of treatment is two-fold. The first is locating the tumor and removing as much as possible. The second is identifying and controlling what hormonal problems the cancer could cause. These tumors have their roots in hormonal changes, so managing these problems successfully is of critical importance in treatment.

Regrettably, despite years of research, there exists no textbook remedy for managing these cancers. It is our staff’s experience in treatment and knowledge of emerging new and better treatments that has allowed us to succeed in combating these rare and elusive tumors. We are very proud that there is a large group of us at Roswell Park that has remained dedicated to understanding these tumors and being aware of and involved in leading new clinical trials and research of neuroendocrine cancers.

To me, facing these cancers, like all cancers, is really a journey from being a patient to being a survivor—becoming someone who has taken their cancer and learned to live with it, to run with it, to make the most of life while fighting. We are here to help anyone become that kind of survivor, and I believe our patients appreciate it quite a bit. It is something I am very thrilled to be a part of.

Roswell Park recently welcomed more than 75 patients and their families to the Neuroendocrine Tumor Regional Meeting: Going from NET Patient to Survivor. Attendees were greeted by representatives from various support organizations and listened to experts from Roswell Park on topics that concern them most, such as financial challenges, symptom management, nutrition and support.

To learn even more about neuroendocrine tumors, view this 8 chapter video series from Dr. Renuka Iyer.